California must face reality: Autism cases are increasing

In 1999, the state of California was in shock: baffling even the most seasoned of authorities, autism cases in the developmental services system had spiked from about 4,000 in 1987 to about 13,000 cases in 1998.

As it turns out, that was just a hint of what lay ahead: today, the Department of Developmental Services counts nearly 10 times that, more than 122,000 autism cases.

Though we hear little about autism data from our public health leaders or media, California’s autism rates continue to surge, with no plateau in sight.

Schools can’t keep up with ever-growing demand. Emergency rooms and police departments are reeling from increasingly frequent crisis cases. Families are desperate for support and solutions.

The future looks even bleaker, as autistic students are aging out of school and into an adult services system woefully unprepared to meet their complex needs. Based on Department of Developmental Services data, the demand for adult services and housing will likely grow five-fold over the next 20 years, from 28,000 developmentally disabled autistic adults over 21 today, quintupling to about 140,000 in 2040.

Not only that, but their aging parents are losing the physical, mental and financial ability to care for and house them, magnifying the inevitable need for public support. 

Despite the surging numbers and the gray hairs sprouting on our autism parent heads, there are presently no plans to grow our already beleaguered adult autism care system by more than 500%. In fact, as we struggle to keep struggling programs afloat, there are no plans to grow our system, at all.

While nobody fully understands what is behind the dramatic increase in autism, two things are clear: it’s not vaccines, and it’s not a change in criteria.

Though it has become fashionable to blame rising awareness or diagnostic shifts, those arguments are well past their expiration date. 

Let’s be clear: in the Department of Developmental Services, we are not talking about quirky Sheldons or Good Doctors who may have gone undetected in the past, but instead individuals with limited ability care for themselves or earn a living, and who often need constant care and oversight to keep them and others safe.

Entry into the system rests on objective findings of substantial impairment in key areas of basic functioning like communication and daily living skills, and since the state enacted more stringent eligibility criteria in 2003, the door for entry has been narrowing, not widening. No it’s not “better awareness.”

And of course vaccines have nothing to do with autism. Autism has its genesis in abnormal wiring up of the early brain, starting well before birth. Aside from biological implausibility, a multitude of epidemiological studies have found no link between vaccination and autism. If anything, vaccines protect against early life infection that can cause brain damage.

Back to the data, here’s more background Californians need to know:

• The Department of Developmental Services identifies only 451 current autism cases from birth year 1984 (they will turn 36 this year), compared to 7,273 cases for birth year 2014, who will turn 6 this year. This is a 16-fold increase, with hundreds more born that year still expected to seek admittance. Worryingly, this upward trend shows no signs of abating.
• Autism represented 5% of overall DDS cases in 1993, but now occupies nearly 40%. Disability service providers have been struggling to serve the autism wave, with its qualitatively different, and often more challenging, characteristics.
•  The California Department of Public Health has found a 10-fold increase in prevalence from .11% for 1987 births to 1.1% for 2013 births. Unpublished data indicate it is now closer to 1.4%. These numbers should dispel any notion that population growth or immigration is driving the autism increase.
•  California Special Education autism cases have also skyrocketed, from 14,038 cases in 1990 to 120,089 in 2018, an 8.5-fold increase. This autism spike has been fueling the need for ever-larger special education budgets across the state.

Alarmed by the lack of public reporting on autism growth, last month Autism Society San Francisco Bay Area called for a California Autism Reporting Program from the California Department of Public Health. 

It is the least the state could do. These details, including levels of impairment lurking beneath the numbers, and the projected needs and costs for housing and services, are absolutely necessary if we are to responsibly find solutions for this burgeoning, vulnerable population.

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Jill Escher, the mother of a young man and teenage girl with nonverbal forms of autism, is immediate past president of Autism Society San Francisco Bay Area, president of the National Council on Severe Autism, and founder of the Escher Fund for Autism, jill.escher@gmail.com. She wrote this commentary for CalMatters.